Pancreatic tumor at 28 years old?

[Braintoobig]

After being sick for almost 6 months now, an abdominal MRI has discovered a small tumor on the pancreatic head/tail junction.
My symptoms started 6 months ago as generalized swelling and tenderness of the lymph nodes all over my body, nausea, vomiting, weight loss (I have since gained it all back), enlarged spleen.. etc. There was high suspicion I had mono but all of my tests came back negative.

Fast forward to last month, I started getting really bad epigastric pain and left upper quadrant pain. It would last for a few days and then die down to a dull nagging pain. I felt it in my back sometimes too. I toughed it out until I had another episode only the second episode I had white stools! Freaky!! Then I had a fever of 101.3. For me to get a fever is extremelyl rare. This is only the second fever I've ever had in my entire life. This is what scared me so I decided to go to the doctor. I saw the greatest PA ever. She ordered an abdominal ultrasound which lead to an abdominal MRI which identified the tumor.

I'm just NOT convinced that this could be cancer. Pancreatic cancer at 28 years old is almost never heard of. I'm going to be seeing a pancreatic surgeon at Georgetown University Hospital for biopsy.

What else could this be? Could a cyst or a benign tumor be making me this sick? I'm just not convinced it's cancer. That's just too weird for a 28 year old.

I don't have any family history of this, only my Grandpa got colon cancer at 75 years old. A few people have had their gallbladders removed and my mom and Grandmother have had diverticulitis. A few of my great uncles have diabetes. Nobody has pancreatic cancer.

[CaliforniaGirl1974]

what  to do and where to go  with 1.5 cm leasion on head of pancreas ? i have to wait to see GI  for 4 months, since iI have social medical insurance (.
I went to pancreas cancer simposium in San Francisco, it is was just handfull  number of survavors ( .  
my email ***@****

(916)6226032

[CaliforniaGirl1974]

what  to do and where to go  with 1.5 cm leasion on head of pancreas ? i have to wait to see GI  for 4 months, since iI have social medical insurance (.
I went to pancreas cancer simposium in San Francisco, it is was just handfull  number of survavors ( .  
my email ***@****

(916)6226032

[CaliforniaGirl1974]

what  to do and where to go  with 1.5 cm leasion on head of pancreas ? i have to wait to see GI  for 4 months, since iI have social medical insurance (.
I went to pancreas cancer simposium in San Francisco, it is was just handfull  number of survavors ( .  
my email ***@****

(916)6226032

[sis1960]

Does anyone know of a top pancreas doctor in Chicago area?
My husband was diagnosed  with a mass on the pancreas,and we want the best doctor.
Please help .

[Andycarolyn]

I am 28 years old have a 10 month old son and was diagnosed with a pancreatic neuroendocrine tumor as well upon my return of a  12 week off maternity leave.  I asked for random blood work to make sure all was well with my health as I have Crohns disease also. My pancreatic enzymes were elevated which led to an mri and a tumor reveal. I'm so glad all has worked out for you. I also chose to get my tumor removed in November and am very thankful that I did. They were able to remove the tumor without removing any pancreas. The fear of the tumor was just another bump in my road of health. The issue I faced was the fear of dying and my then only three month old son would never remember me/know how much I love him. the worst feeling ever. I thought I was alone in this journey. Just so you know... you are not alone either. I guess we were put on this earth to fight battles young for some reason.. Yours may be to be an inspiration to your future patients, mine maybe to make myself stronger for my son.. either way, Im so happy all is well with you! My 6 month appointment is coming up in over a month. Im scared to death something has returned. how did your check up go?

[Verocharlie]

Awesome story, I'm so glad it turned out good for you...I have a mass on my pancreas and the biopsy was benign now they want to do an other biopsy in 3 months. My mom passed away of pancreatic cancer at age 48 so I'm pretty worried.

I'm reading different opinion on removing a benign tumor or not.

What to do???

Any good pancreas specialist in California?

[evlangel06]

Hi, I sent you a PM and am not sure you got it. I would like some advice on what I have been going thru, very similar to your story. Hope you are still doing well!:-)

[Londres70]

Hey Braintoobig......I missed you!   PM me dear.  :<)))

[summerluvr]

Great to read your story, I hope you get into Med school and continue to be well

[Braintoobig]

Wow I haven't been on this site in a long time! I appreciate everyone's questions and thoughts!
Well where do I begin? lol
After thinking long and hard about what to do, I decided that I did not want to have my surgery with Dr. Johnson. I was just so frazzled and unsettled over him wanting to remove so much and the only reason he gave me was because he didn't want to have to deal with the complications that come from doing a spleen preserving surgery. I went with my gut instinct and got a second opinion from Dr. Choti at Johns Hopkins. He is a surgical oncologist and is a specialist in neuroendocrine tumors. His story was very different from my first surgical consult. First of all, he said that leaving the tumor in and watching it was a bad idea because I'm too young to take the risk of letting it get worse. He wanted to remove it immediately. The second thing he said was that even though these tumors look "benign" under a microscope, they still behave very much like malignancies and can still metastasize (Thank God I went to someone who understood how these unusual tumors behave). The third and final confirmation that Dr. Choti was the right surgeon was he said if I opted to do an open surgery instead of laparoscopic then he could save my spleen. I said, heck yes open that baby up! Who cares about a stupid scar when I can save an entire organ??
I had the surgery on June 29th, 2011 at John's Hopkins. I have a 5 inch incision down the center of my abdomen and he removed about 45% of my pancreas but I still own a spleen! The surgery lasted 6 hours and since I tolerated the surgery so well, I didn't have to spend any time in the ICU. I went straight to a med surg floor and spent 6 days there recovering. I still had the drain in my stomach and IV's but no NG tube, no need for insulin. My potassium dipped pretty low for a while but they fixed that easily. Overall, my care at Johns Hopkins was just outstanding. The nurses on the Sidney Kimmel Cancer Center unit were some of the best nurses I have ever had! They were so attentive and compassionate. They even treated my family members like VIPs! The residents under Dr. Choti were also wonderful and if I ever needed anything, they were at my bedside within 10 minutes. It was amazing there. I'm sure Dr. Johnson is a great surgeon but I wish he had given me more of a voice in what I wanted in my care. If I express extreme concern and strong feelings against something, then it would have been nice to give options. Overall, I know I made the right choice and I am very very happy with my outcome.

It has been just over one year since my surgery and I feel great! My mini pancreas doesn't secrete enough digestive enzymes to digest properly now so I do have to take Creon but my blood sugar has been completely fine. Digesting is still somewhat of an issue but overall, I have been doing extremely well. In addition to the tumor, I was also diagnosed with celiac disease so I'm on a gluten free diet and that has also been making me feel amazing. I was supposed to have my annual follow up scan in June to see if I'm still ok but it seems as though Dr. Choti and I have a problem meshing our schedules! I won't get to see him until the end of October now.

Other news, I graduated college in May with my bachelors in physiology and neurobiology, took the MCAT in June, and I'm applying to medical school now! I have been offered 3 interview invites which is a good sign. I hope one of them offers me an acceptance and I can continue on with my new healthy life!

If I can offer any advice for someone who is facing this, that is to just keep pushing for answers. If you don't feel comfortable with a doctor's opinion then find a second opinion. You have a choice in all of these things so make sure you fully understand what is happening. I appreciate all of the messages on this post. You guys really make me feel special :) Things are going really well now.

[Saguayo]

Hello, just had a question. I’m 36 yrs old and was just diagnosed with a 2cm pancreas cyst. They want to do a mri to see how to treat the cyst. I have very bad nausea and sometimes pain that goes to the back. Can cyst make you feel this bad? I also feel more tired and seem like I lost a bit of weight. Could it be a cancer cyst? They surgery options given were drain it or remove it. Depending on why type of cyst it is.

[pancreashatesme]

I am writing in hopes of hearing the follow up to your situation in case you come by too post on your results.  What a difficult choice, and your so young.  I do hope it all worked out alright for you.  I too am waiting for my mri results been having pancreatitis symptoms which are similar to the ones of cancer.  I had cancer before, so its always scary when the results arent in yet.  I am hopeful.  I loved your attitude towards your cancer, and the people here are very supportive.  I hope you post a follow up, and that even if you dont get to be a doctor, your already an inspiration by your compassionate concern, and care towards others.  Praying you are well.

[sweetlilgina]

It has been almost 4 months since your last post. How are you coping and what treatment did you decide to undergo? Wait or remove the tumor? Wishing you the best and hope your recovery is bearable.

[Braintoobig]

I saw the pancreatic surgeon today. It didn't go very well, not because he's a bad doctor but he didn't give me very good news.

There were two doctors actually, the pancreatic surgeon and the general surgeon. The general surgeon examined me first and then the pancreatic surgeon came in to deliver my news.

He said that this tumor will eventually become cancerous. He did say that these cancers are very slow growing and gave me the option to wait 6 months to do another MRI to check its progression. My other option was to have it surgically removed.

Sounds simple at first right? Remove the thing before it turns into cancer! Well, the surgery is absolutely horrific. First off, the location of this tumor is causing him to have to remove half of my entire pancreas. He wants to remove HALF my pancreas. AND since the pancreas and the spleen all share the same circulation he has to remove my spleen too!

A person can live with out a spleen but your immunity to infection is lowered. Here's my concern. I'M IN SCHOOL TO BECOME A DOCTOR!!! How in the world am I supposed to be a doctor with a compromised immune system?? I can't be around sick people after this surgery!  

And this isn't even half of it. The surgery is quite extensive. It will take about 4 hours to complete, it requires a 5 day hospital stay, I can't eat for 3 days after, my blood sugar will be crazy so they will be injecting me with insulin, I have to be on blood thinners after, I'll have an NG tube (tube in the nose that goes down into the stomach), I'll have a drainage tube at the incision site that I have to wear for a while, AND there is a chance I will be type 1 diabetic for the rest of my life.

I'm just devastated. I'm so so stressed out. I feel like this surgery is going to ruin me. But if I don't do it then I'll get cancer! I just can't win in this situation. I'm so lost and scared. I haven't made a decision on what to do yet and figured I needed a few days to think about it. Neither option sounds good but eventually I will have to have this surgery because it will become cancer one day. I just have to suck it up and face this surgery but this is just so damn hard. I really didn't see this coming.

I'm really really lost right now.

[Londres70]

You made a good point!!  

[Braintoobig]

wow thank you! That was so nice to say! You made my day!!

Sometimes I wonder if living a wild life would be better too. I'm guessing that we'll be alright in the end, just maybe a minor bump in the road.

Good riddance George! He needs to go! lol

[janeybugs]

You are a nice and good person !!  I do not smoke or drink either and am a "giver".  Sometimes I wonder if it is better to live a wild live and be selfish.  Those people seem to live to be 100. lol   You will overcome these health issues one day.  You sound like you make the world a better place just living in it.  :)  

[Braintoobig]

Hello again! It's definitely not as serious as the adenocarcinoma of the pancreas. That's the one that has such a low survival rate. I guess I got lucky. I am hopeful that removing the tumor will be curative and that will be the end of it. But, we'll see!

Thank you again everyone for your replies! It really means a lot to me.

[Londres70]

Wow!  Good you got answers.  At least all that is being recommended is surgery.  You are so young too.  Very surprised.  

I do wish you all the best.  

[Braintoobig]

I have been working toward going to medical school so that I could help people like us who get tossed around and cast aside by doctors that don't care. But I feel like everytime I get back on my feet, I get sick again. If I could just get my health straight then I could finish school.

I am trying to do good in the world. I just would like if my health didn't keep standing in my way! I don't even drink, I don't smoke, I take good care of myself. I am already on a special diet to treat endometriosis naturally without drug treatment. I can't restrict my diet anymore restricted than it already is!

I'm just so tired of all this. Then I see people out there doing stupid things to ruin their bodies and they're out enjoying life. I feel like I just can't catch a break. I just hope and pray that this is the end to all of my problems. I want to be normal again and finish school.

[janeybugs]

It surprises me also they want to wait.  I have waited 3 months and am about to go see a different doc.  Though I do not want a bunch of tests and no biopsy which they would just have to repeat the tests then.  So I sit here looking for other possible pc victims.  I don't know if I am allowed to tell you about a group of neuroendocrine cancer girls that I found on Sexy Crazy Cancer Newsletter.  They are young and many fight this with nutrition.  You will be free of it but you might get some tips from some of them.  You can compare symptoms anyway.  Its been an education for me to learn about as I did not even know it existed.  Good luck to you and have a long and wonderful life.  Do some good out there and adopt a dog or feed the homeless !!

[Braintoobig]

Hello! Yeah I'm super happy about the diagnosis and very optimistic of the outcome. It's like nothing compared to other cancers. Although rare, this is going to be relatively easy to deal with. My tumor is 1.5cm on the body of the pancreas. I have a bunch of vague symptoms that I'm not sure are related or not (chronic constipation, left upper quadrant pain, periodic white stools, crazy lymph nodes, fevers, extreme nausea, vomiting).
I'm surprised they are doing the "sit and wait" with your pancreas. The pancreas is nothing to mess with!

[janeybugs]

I say F George and the horse he rode in on.  This is the best kind of cancer to have from what I have read.  Very slow compared to the exocrine kind.  I am happy for you because while it is not ideal it is very good news compared to most pancreatic cancer dx.  How large was the tumor?  I have a 5mm lesion in head of pancreas with symptoms (back pain, abdominal pain, right quadrant pain, floating stools)  All bad and indicative of cancer.  Lesion too small to biopsy so I am waiting which is difficult without planning my funeral.  So glad they can just remove yours !!  If I have cancer yours is the kind I am asking God to give me.  I have read of people with this endo type living for decades with the tumor still in them.  Good luck with that surgery.  I am sure you will be fine.

[Braintoobig]

I'm probably talking to myself here but I at least wanted to share my results with somebody!
My tumor biopsy showed that this is a pancreatic neuroendocrine tumor. I guess it's technically a cancer but is usually called a carcinoid because of how slow it grows?

Nevertheless, I'm happy to know that it's only in one place and that surgically removing it is all the treatment I need. I see the surgeon on April 13th so we'll see what he says.

Thanks to those who took the time to read.

By the way, I named my tumor George. haha

[Braintoobig]

Just to kinda update in case someone finds themself in my situation, I saw the pancreatic surgeon Dr. Lynt Johnson yesterday at Georgetown University Hospital in Washington D.C.
Overall good news! He basically said he couldn't give me answers until my biopsy on Friday but offered his opinion on what he thinks this is. He really doesn't think it's cancer (OMG YAY) but he does believe that it is some benign tumor that could be causing a blockage in the pancreatic duct that secretes digestive enzymes and that would explain why I've been getting so sick. He also thinks that this tumor is causing random bouts of pancreatitis which would explain the pain. And inflammation can cause your lymph nodes to be wacky which would explain that problem I've been having too! Treatment for that would be to remove the tumor which is a laproscopic surgery except for a 3 inch incision where they have to stick their hand into (ew).
I feel better about all of this after hearing that he doesn't believe it's cancer. His chief resident gave me the cancer talk but the actual surgeon doesn't think so. The chief resident also said that if he ever had a sick family member with a pancreatic issue that Dr. Johnson at the pancreatic disease program at Georgetown would be where he'd take them. He expressed his absolute confidence in the pancreatic program there and it made me happy.

I'm just feeling better about all of this. The prospect of them being able to remove something and I can go on to be normal again is just extremely exciting to me. Oh geez I hope!

So fingers crossed for Friday! My biopsy procedure got pushed up from afternoon to first thing in the morning and I should have the results of that by Tuesday next week.

If anyone is in the D.C. area with a pancreatic issue I HIGHLY recommend Dr. Johnson. He's absolutely excellent. The entire staff there is just excellent. I'm very happy and I'm so confident that I'm in good hands!